Tuesday, September 23, 2008

I'm back at the hospital, and Graci looks SO good! She was so excited at 6:00pm when she finally got to take a drink. She's also had a little ice cream:) She's experiencing some pain, but I don't think it's too bad. They're still giving her morphine. It was cute when I came in -- she gave me the biggest smile. She continues to do well and we're hopeful she may be able to leave ICU tomorrow.

Graci's voice is really quite hilarious right now. She sounds like a little mouse or something. It's a higher-than-normal pitch and extremely weak. So her nurse just came in to check on her. Graci had been asleep, but when the nurse started checking the lines on her hand and arm, Graci woke up. Graci started saying, in her pathetic, whiny falsetto, "Owie!, owie!, owie!" The nurse said, "Are you hurting?" And Graci responded with a nonchalant, "Not really." We all cracked up. I guess she was just anticipating pain. What a cutie:)

Oh, Graci looks so much better!! It is always so good to see someone get their vent out-- she is so much more herself! She was upset after they took it out because she had to sit up a little and it was hurting her, but she soon settled down and is now resting. She'll be able to drink a little in 4-6 hours and that will help her tons.

Our next door neighbor and mother of Graci's best friend is a nurse here once a week. It was her shift today and it was fun to be able to see her and have Graci see a familiar face. We just got done from eating lunch together and it was so good to have some company. Jer's still at home trying to rest up a bit. He's watching Elli so Mom and Dad could go to a doctor's appointment and come visit Graci. I thought that was a pretty crummy birthday-- not feeling well and having a daughter in ICU-- but then I read Leslie's comment about the success of the surgery being the best birthday present ever, and that made me feel better. I love you, hon! Happy Birthday!

I am sitting by Graci's bed in the ICU-- I finally got smart and thought of bringing the computer in here so Graci could hear the music from the website. This was a good thing!!! She has finally settled into a restful sleep. The doctors have done their rounds and are wanting to take the vent out today (hooray) but we're not sure when that will happen. ):

Jer, loved your post about Elli in the night-- you got it perfect! Thanks so much for being patient with Jesi. And Mom, thanks for all your help with Elli. I actually got a better night's rest than the both of you!! That's truly something...

I've made friends with the family of the patient next to us-- they are from Rexburg, ID and have the cutest little baby girl in here who just had heart surgery as well. It is heartbreaking to see all the kids in the ICU-- and yet such a miracle when you think of all the technology that makes it possible for them to be here. So many of them wouldn't have survived in any other time than this.

I can't say thanks enough for your thoughts and prayers. Graci is definitely benefitting from them.

I just spoke with Christi on the phone. She stayed overnight at the hospital. Fortunately, she was able to get one of the waiting rooms with a bed. She said that overall, Graci is doing well. In fact, they're pretty close to removing her breathing tube. Unfortunately, before they can do that, they have to bring her back pretty close to full consciousness. Up until now, she's been at least somewhat sedated, so she wasn't too aware of the pain, and wasn't too aware of the ventilator. Now, as she's coming out of sedation, she's in tears all of the time. She's feeling the pain in her chest and other areas. Probably most disturbing of all for her is the thirst. With the ventilator in, she can't have anything to drink (and hasn't had anything since midnight on Sunday!) so her throat is miserably dry. The only thing they can do is swab a little bit around her lips with a small, wet sponge. She also wants to be sung to all of the time, so Christi's vocal cords are getting a workout. But at least her progress is good.

I came home last night with an excruciating headache, which I had suffered through for most of the day. As I was able to get away from the stress of the hospital, eat some good food and relax just a bit, I started to feel a little better. I helped get the kids to bed, and got to bed myself by 9:30. I slept solid until 2:00 am, when I heard Jessica crying and starting to open my bedroom door. Then I heard my sweet mother-in-law, LaRita, quickly rush to Jesi's aid so I wouldn't be disturbed. I was just drifting off again when Elli started into her angry cry. Elli wakes up many nights. Some nights, she's just fussy and has a sad cry. Usually in this case, she can be calmed down fairly quickly and will fall back asleep. Not so on the nights she wakes up angry!

You have to experience the angry cry to understand it, but I'll try a little description. She puts every ounce of strength she has into this cry. (And she is a STRONG little girl!) This thing comes straight from the diaphragm and permeates walls, ceilings and other obstacles in it's way. (In other words, on a normal night, when Christi and I are both sleeping at home, if Elli starts into her SAD cry, I can reasonably be a lazy slug and pretend not to hear her while I wait for Christi to get up and help. But on such a night if Elli starts into her ANGRY cry, there's no pretending. I simply admit I'm a lazy slug and let Christi get up and help. Wait, there's not too much difference, is there? Well, I digress:) The angry cry is so piercing that you seriously feel like there is permanent damage being done to your eardrums as you approach her to hold and help her. Usually it takes a minimum of 45 minutes to calm her down. And usually, if she's woken up with her angry cry, she won't fall back asleep that night. What you hope for in this case is that she'll calm down enough that you can leave her in her room and go back to bed. After you get back into bed, you'll start to hear her again, but at this point, she progresses to her euphoric elation stage. She finds humor in something down there in her bedroom. We don't know what it is, but you've never heard laughter quite like this. She gets absolutely hysterical. Again, this strong, loud laugh is pretty permeating, but we've learned to sleep through the sound of that, while sleeping through the angry cry is virtually impossible.

Anyway, both the girls were going strong at 2am this morning. So I got up and helped Jesi while LaRita helped Elli. What really hit me at that point was how blessed I was. Usually, I'm not so great in the middle of the night. I can be a bit grumpy. But what a blessing. On a night when I really needed patience to get through Jesi's refusal to settle down, I was blessed with patience. It was also such a blessing that my headache was gone at that point. I'd had this headache (sometimes stronger, sometimes weaker) for about 48 hours. But when I woke up with Jesi in the middle of the night, it was gone. The tender mercies of the Lord can be so subtle that they're easy to miss. But they are tender mercies, nonetheless.

It took about 25 minutes to get Jesi back to sleep, and LaRita let me go back to bed while she continued to help Elli. (I fell asleep to the sweet sounds of laughter coming up from the basement.) I woke up this morning at 7am feeling much better. Whatever illness I've had seems to have settled in my chest and is localized to a pretty rough cough. But overall, I feel much better. The cough will severely limit my time in the ICU, so hopefully that will go away quickly. The kids (with Grandma and Grandpa's help-Dean went to Wendy's:) brought me breakfast in bed for my birthday. It was sweet that they would remember this little tradition in the midst of such tumultuous times. We have great kids!!!

Thanks for all of your love. It's neat to see how many of you are interested and concerned enough to check in on a regular basis for updates on Graci. We'll keep them coming!

Meet Conner and Cali

When we fell in love 15 years ago, we started down a path that has been challenging, exhausting, and breathtakingly beautiful. Here we chronicle the blessings and stressings of parenting some pretty amazing children. We think they're the perfect travel companions as we look forward to the next fork in the road. Welcome to our journey.

Jeremy and Christianne

Taylor Jeremy--16

Parker Matthew--15

The red-headed social butterfly, he's our all-star athlete, top student, outdoor-loving, spunky second-born, with a heart of pure gold!

Jessica Anne "Jesi"--12

Our little princess with the big smile, Jesi loves dress-ups and tea parties, reading, playing with her siblings, and snuggling. She sparkles!

Jacob Michael-- 6/8/2004

Little one of heavenly birth, born too soon to bloom on earth. You have taught us so much--we love you, Jacob!

Emily Anne "Emmy"--9/28/2005

Emily's exquisite little hands and feet have left their mark in this world. Her body was tiny, but her spirit enormous. We miss her!

Elizabeth Mei "Elli"--11

Elli's world may be dark, but she's the light of our lives! Lover of music, chocolate, and Mommy's arms, she brings joy to all who know her!!

Gracelin Kate "Graci"--17

Showing true grace throughout her battles with heart disease and pulmonary hypertension, our Gracester is loved by everyone! She's smart, gorgeous, friendly, and has faith to move mountains!

Alexander Philip "Xander"--10

With a spunk and smile that could outmatch anyone's, our Xander has not let Cloves Syndrome get the best of him. Adopted at age 4 from China, he loves having a family, eating junk-food, and playing with his many friends!

Alexis Li "Lexi"--10

Meet the friendliest girl on the planet! Blind from birth, Lexi amazes all of us with her braille skills, determination, talents, but mosly by the way she spends her days SMILING. She is an angel in every way. We are thrilled to have our darling daughter home three years from China!!

Sophia Breanne "Sophi"--7

Her eyes called out to us from half-way around the world. Little Sophi is beautiful, smart, and coy. She can do amazing things with her little toes and we think she's about the cutest thing on the planet! Welcome home, baby girl!

Calais Rose "Cali"--14

Charming Cali joined our family in December of 2012. This girl is beautiful both inside and out. Born with spina bifida, Cali is confined to a wheelchair, but that does not keep her from enjoying life to the fullest. She is smart, opinionated, strong, and lovely in every way.

Conner Allen-- 15

Meet our newest addition! Wu Jia Xia is from Wuhan City in China. Blind from birth, he will blow you away with his incredible talent on the piano. More importantly, he is sweet, witty, kind and finally, OURS! Welcome home, Conner!